This is a lot of what happens to me. I am generally unable to function for 7-10 days and tend not to remember much about the week. It's a lost week. Then I'm yucky for 2-3 more weeks. During these times everything that goes in my mouth bothers me. I also have terrible joint pains, insomnia, migranes, skin problems, etc. I have PCOS too and I swear every time I get glutened I develop a cyst. I too have been tested for everything under the sun and not much is out of whack. I'm just "too healthy to be this sick."

Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...

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I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.

Peanuts were so much harder for me than gluten, too! All my favorite candy had peanuts, and I spent a good week thinking about "what if I just have a little bit of peanut once a month or so..." It does seem silly because peanuts are so much easier to avoid than gluten.

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Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...

It's difficult sometimes but I found a groove about a year ago and am generally healthy now provided I stay away from the smallest amounts of gluten. Initially I was tempted to try new gluten-free things and trust people who really had no clue how to prepare food and was getting glutened every few months or so so I don't think I was fully healing. I did this off and on for about 18 months. I was getting better every day but was always frustrated with the setbacks. Once I stopped taking chances I started really improving but it still took another 12 or so months.

I had a lot of nutritional deficiences when I was diagnosed and everything is normal now.

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Initially I was tempted to try new gluten-free things and trust people who really had no clue how to prepare food and was getting glutened every few months or so so I don't think I was fully healing.

That's kind of what I did. Somewhere around the end of Nov I realized that I just cannot trust anyone but my husband or my mom to cook for me. That just because a product says gluten-free on it, doesn't make it safe. And just because a food is naturally gluten free, doesn't make it safe in a restaurant.

In some ways, I am glad that I am sensitive, although there are days when it wears on me. But it makes me very cautious about food, and I think in the long run, it keeps me from doing any further damage, whereas perhaps those less sensitive may be doing damage but not have any symptoms. I don't know whether I'm right on that or not, but it sure does help alleviate some frustration.

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I do best when I don't take any "chances" (and by "chances" I mean eating many things that others with Celiac enjoy without problems). It seems almost every time I deviate from this, I get sick. I have to walk the "straight and narrow"

I'm just speaking for my self here, but this includes topical products. I love to try new things, having still not found the perfect hair products .....kind of a never-ending quest which is made all the harder having to worry about gluten. I also need to avoid tocopherals and vitamin E in products unless I'm able to find out where they were sourced. That is very hard to find out, as most companies will gladly tell you if they add "gluten", but they have no idea where the E comes from.

I have to agree with everyone about the peanuts! I have developed a liking for almond butter, but I still crave peanut butter.

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I'm nearly three years down the line, I'm still not 100% right. There is still something that gets me. I have wondered about peanuts, now and then I will ditch them, but they seem to creep back into my life. I cannot tolerate roasted nuts, so my only peanut indulgence is organic peanut butter, which is just peanuts, oil and salt. I think I can handle this. But in having said this my stomach is playing up this morning. It could be the peanut butter, or it could be the coke zero I had yesterday. I'm more inclined to say the coke.

In reality I have given up soy, except for maybe oil and soy lecithin. Gluten free flours and pastas with soy would give me bad stomach issues and pains, usually on my left side. It was easy to give soy up, as personally I don't like the product.

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Patti, the coke had Aspartame (951) and something called acesulfame K (950), plus the usual caramel colouring (150d). Take my pick. It was a hot day, and the beach was calling and I was thirsty, and they didn't have diet lemonade, so I grabbed the next best thing I knew they would have!

Cathy

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I hear ya! Sensitivity to sweeteners is an individual thing--some can use them freely and some can't. It's hard sometimes to figure out what caused what, but the next time if the same thing happens, it'll ring a bell.

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Patti, I understand about the chances. I am the same way. I think a lot of my problems are really because I have so many other intolerances and each has a specific set of symptoms so I've learned through trial and error which gluten-free products don't cause any symptoms and stick with those. I make everything else. I really feel best when I do this so that's my motivation. I have so much to do and I really don't like having to limit my activities.

Liz, my husband is the only one allowed to cook for me these days.

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Patti, I understand about the chances. I am the same way. I think a lot of my problems are really because I have so many other intolerances and each has a specific set of symptoms so I've learned through trial and error which gluten-free products don't cause any symptoms and stick with those. I make everything else. I really feel best when I do this so that's my motivation. I have so much to do and I really don't like having to limit my activities.

Wow yes, that's it exactly.

We must be Celiac soulmates

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I do best when I don't take any "chances" (and by "chances" I mean eating many things that others with Celiac enjoy without problems). It seems almost every time I deviate from this, I get sick. I have to walk the "straight and narrow"

I went to a support group for the first time ever, and had to listen to this man who made biscuits, took them to bojangles and TOOK THE HAM OFF THE BISCUIT AND PUT IT ON HIS gluten-free BISCUIT!!!!!!!!HE washed it off though....

I shudder to even think what would happen if I did something like that.

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I went to a support group for the first time ever, and had to listen to this man who made biscuits, took them to bojangles and TOOK THE HAM OFF THE BISCUIT AND PUT IT ON HIS gluten-free BISCUIT!!!!!!!!HE washed it off though....

My gawd.....yeah, I can't even imagine. But the fact that he washed off the ham did give me a little giggle.

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So far I've only tried the name brand Natural Sunbutter by Sun Gold foods .. it says gluten-free on the label. I've been ok with it .. This is my 4th jar in the last 2 months ...

Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.

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Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.

I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.

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I'm just speaking for my self here, but this includes topical products. I love to try new things, having still not found the perfect hair products .....kind of a never-ending quest which is made all the harder having to worry about gluten. I also need to avoid tocopherals and vitamin E in products unless I'm able to find out where they were sourced. That is very hard to find out, as most companies will gladly tell you if they add "gluten", but they have no idea where the E comes from.

I have to agree with everyone about the peanuts! I have developed a liking for almond butter, but I still crave peanut butter.

I have to be super careful with topicals too. A lot of people try to claim it's perfectly safe, but obviously its not for some of us.

Do try the sunbutter, I think it's delicious. I intend to use it to try and make peanut butter swirl chocolate ice cream.

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I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.

Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any specific cashew butter that I know to to be OK, so I just do without. From what you said, I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!